multiple sclerosis

In the Face of Failure

Content Warning: Hard truths about MS, Psoriatic Arthritis, Ankylosing Spondylitis and physical losses associated with them

Mavenclad failed. My neurologist won’t say it, so I have to. It is difficult for me to write this because recent changes in my disease progression scare me. I’m not angry. I’m nothing. I want to rage against the further loss of my ability to walk. I can’t tease out which autoimmune condition is causing what. I actually think they are tag teaming this one. The Psoriatic Arthritic hip and SI joints are causing spasms across the SI joints and upper thighs which eventually collapse me – yes it would be “falling” but I’m usually not far from a chair, or I’m spending more time in my wheelchair because I have no choice any longer.

I’m losing sensation, mostly on my left side. I had a small 2nd degree burn on my left index finger from accidentally connecting said finger with a mental baking sheet from a 425°F oven. I felt the initial burn, but I did not feel the pain from the actual burn afterwards at all. It was the weirdest thing. I’ve burnt myself cooking many times. I’m somewhat klutzy in general, always have been. It’s not uncommon for some kind of accident in the kitchen – I have a saying for any project I do “If I don’t bleed at least once during the creation process, it won’t turn out.” Not feeling a burn is a dangerous thing. I have a naturally high pain tolerance, but that doesn’t mean I don’t feel it. It just means that I don’t acknowledge it until it becomes incapacitating and even then I stand up and push on. I’m waiting for an MRI that includes my Thoracic Spine to see what’s happening. I rarely have changes on my MRIs my existing lesions are in areas that also explain what is happening. Secondary Progressive MS is a constant acceptance of loss.

It’s not all bad news. I think I have found an Arthritis treatment that seems to be working. Took longer than I expected to get the GI issues to calm down. They were uncomfortable and I almost quit on Xeljanz because of it. I am waking up with what I consider to be background pain that mostly goes away after I get moving – except that back, hip combination which tries to floor me, literally.

I am beyond fortunate that I have been able to afford a new powerchair that will accommodate any and all changes that I am now experiencing and I am excited for the arrival of my new chair. It will be “fully loaded” – all of the bells and whistles so to speak – except maybe the ability to have turn signals – I don’t think it will come with that. I didn’t specifically ask for that. Mine will be in Aqua – it was such a difficult choice. I almost chose the Canary yellow. I will be able to move up to counter height, tilt forward for extra reach of shelves in fridges or to fit my legs under tables. I will be able to tilt and recline and adjust my chair to the angles I need to make space in my ribs so I can breathe easier (spasms and pain from Psoriatic Arthritis and hypermobility are the cause) . It will be a chair that supports the new Me, and future Me for quite some time. Still have to file the paperwork with my insurance company and we’ll carry some debt for awhile – but I won’t have to add anything other than seating changes as long as I maintain the electronics. My current chariot will be kept for rugged yard work – or camping. I will clean it up and likely donate it if my new chair proves to my husband, D, that it is a viable replacement – he’s not convinced because it is a mid-wheel rather than a front wheel like my current chair. I wanted something more house friendly since I will be spending a lot of time sitting in it.

Permobil M3 powerchair in Red. Mine will be Aqua when it arrives.
Permobil M3 powerchair in Red

What can I say, 2020 hurt us financially for awhile, but we’ve clawed our way back. D’s job was dicey, but they’ve managed to survive, and he’s back to full time work. I’ve been able to restart my membership with the MS Gym . I haven’t been able to find anything that equals it for explaining the importance of exercise nor breaks the exercises down into manageable chunks. While I was unable to afford the program from almost a year, I kept trying to find something free, or working with physical therapists or occupational therapists and nothing has been as good as the MS Gym. I’m working through the Reconnect program to fight as hard as I can to not lose more. Trying not to lose hope and keep plugging a way.

I spend a lot of time feeding the birds. D helped me plant all of our gardens this Victoria Day weekend. I can’t wait to see all of the little seeds sprout and the seedlings we’ve planted grow larger and produce fruit, but that’s another post. These keep me connected to the joy of life in spite of the hardships of a failing body. The past few days have been hard for me because I’ve been slapped repeatedly by my limitations that are a result of disease progression and not a lack of effort. Today I am down. Tomorrow I get up again.

I am the Walking Wheelchair User. I am not a Fraud.

Me in my wheelchair. The only visible parts are pat of the footrest, a corner of the black cushion, part of the right arm rest, a view of the corner of a grey shirt and beige pants.
Description: Me in my wheelchair. The only visible parts are pat of the footrest, a corner of the black cushion, part of the right arm rest, a view of the corner of a grey shirt and beige pants.

This post comes mere moments after feeling like I had to defend my use of a powerchair as part of managing multiple co-morbid (horrible way of saying that it’s a chicken and egg thing trying to tease out what caused what problem in what order) disabilities and two neurologically based diagnoses. MS being the progressive disabling kind. The other just recently diagnosed based on genetic testing and putting a lifetime of cognitive dissonance into perspective – I am also autistic, but mask and hide very well in public – except when the great Fatigue wall and I slam into each other and then all bets are off because I do come undone in ways that horrify me after the fact.

The facts

My MS primarily presents in 3 ways. Increased muscle tone, and depending on which professional I’m seeing on any given day it’s either termed spasticity or increased tone. I think it’s clinically mild because I’m not yet rigid. I have mobility partially because when my muscles are at their most painfully tight – I am still moving them, stretching them out, massaging until I bruise myself on muscles that are hard as rocks, and massage therapists struggle to release – and sometimes they feel like they aren’t helping me because they didn’t manage to restore any movement to a muscle that feels like bone, but isn’t. It’s a constant, all day, move, stretch, release, masssage, try to ignore pain, take marginally effective medications and hope . I can now ignore a 7 on the pain scale – 8 is a slightly emotionless stilted conversation – 9 I can still speak tersely. A 10 and I have trouble speaking, my eye water on their own accord, My breathing is shallow but I can still force our words, but I’d really rather you shut-up so I can focus on not losing my shit because I’m really about to go catatonic, but I still won’t be wailing in pain. I don’t know what will make that happen, and I don’t want to find out. I only show up in an ER at a 9 (because maybe it actually is my heart when the MS hug is that crushing – it has never been my heart – at least not yet. The genetic anomaly I have is autism and cardiovascular problems, so I might want to consider going to the hospital earlier now that I’m 45 and my family history of heart issues means my genetics are against me.) The longer I am on my feet, the more tone (spasticity) creeps in and the harder my brain and body have to work to just move at all.

The second equally crippling is Fatigue. Fatigue is not tired. Fatigue is not momentary. It’s not fixed by a nap. It’s not touched by sleep. Fatigue rolls in like a thick pea-soup fog that I can’t think my way through. I can’t manoeuvre my way out of. It’s what I imagine swimming or walking through wet cement must feel like (not going to try it to find out.) My worst, and scariest moments with fatigue have lead to disorientation, confusion, and an inability to process my surroundings, and an complete failure to keep my masks in place and appear normal. All my practised smoke and mirrors vanish, and all the things I keep in check come out for all the world to see. It’s not pretty. This is the biggest what came first the life long struggle with Major Depressive Disorder and Generalized Anxiety Disorder? MS? Autistic burn-out from having to mask in the first place? I don’t know. I do know I never want to allow myself to ever get to the point of delirium ever again.

Lastly, at least in my books, is the coordination issues that might be a result of the spasticity – might be it’s own damned thing on top of the other things, but again it doesn’t really matter because it now takes thought to get my extremities to behave in a way that’s functional to do things like eat, cut thing up safely, walk in a reasonably straight line – not fall over and scare the crap out of other people. Me I’ve always been a little clumsy and uncoordinated – I’m used to laughing at myself. Apparently not everyone shares my humour with the wonkiness that is me. The coordination issues have just become more pronounced, and more funky weird as MS progresses. I’m semi-officially SPSMs (It’s been suggested only in my clinical records, but not in such a way as to exclude me from any new treatments )

I hope that all of this explains why I’m a walking wheelchair user, but if not, here’s the best way I can say it:

The longer I’m on my feet the more spastic I get. The more I’m fighting my body to move the more exhausted my brain gets, and then I can no longer regulate socially (autistic), the more I burn out, the more depressed I get (life long challenges with diagnosed Major Depressive Disorder.) The more I can’t read social cues the more social mistakes I make – the more anxious I get (Generalized Anxiety disorder.) Then the fatigue wall sets in and everything becomes an effort. The problem with the EDSS scale is it doesn’t take into account spasticity. It only takes weakness and paralysis into consideration. I’m heading that way (SPMS) I have major coordination issues. Everything takes more effort to control. My left side is a mess… so a manual wheelchair won’t work (I tried before the OT convinced me the effort was not in my best interest. 3 weeks in the Rehabilitation hospital in 2017 was an education in pacing that I am only now taking seriously.) Every day is an assessment: Is today a trekking pole day? A walker day? Wheelchair days are truly horrible days – or I have to be out and about on my own and need to take the cognitive load off so I can enjoy myself or have the energy to deal with whatever it is I have to do. The fatigue truly scared me when I started getting disoriented and confused because I was just that physically and mentally exhausted.

I “only” have an EDSS score of 4.0 – which by all means I should be a free walking person. I am not – not even close. It’s a measurement scale that really takes a very limited view of total disability. I used this scale as justification for a lifestyle that took no consideration of my overall disability load from multiple sources and I “ran” with it until that Fatigue day that shook me into the realization I had no ability to continue. I was done. A new way had to be found. I still don’t know what that new way is. It’s taken 1 year 6 months to get this much perspective. Reinventing myself is hard work. I can walk. I want nothing more than to put mobility equipment behind me. I am learning to be grateful for the tools I have at my disposal to live a happier, gentler, and more accommodating life for no-one other than myself.

I want to be an Abelism Denier

I am the type of person who tries really hard to accept people at face value. What I mean by this is I take you as you present yourself on a day to day basis. I try not to make snap judgments, especially when I hardly know you. I know that one meeting is just one meeting. Many meetings over time are necessary for me to get a “baseline” expectation for how you and I are going to work (or not work) together. Before I decide that we won’t work, though, I’m a questioner. “I see this happening between us. I’m curious as to why this is happening? Here’s what I need…. how can we work together to do this? What do you need? Where can we find common ground to work together?” I try very hard to recognize that we all have stuff to work through. I also try hard to recognize that everyone has a place around the table if we just learn to work together. It’s why I find any sort of -ism so challenging to wrap my head around. I am very aware of my privilege, and work very hard to throw myself into someone else’s shoes when I don’t understand their point of view until I get it or at least a reasonable facsimile of understanding between us. I can’t truly understand what I haven’t lived. Compassion is my strength.

Before I was visibly disabled and a wheelchair user, I had a bunch of invisible challenges that were disabilities, and it was a huge uphill battle for recognition. I was involved in my workplace’s Disability Committee to ensure that the work I was doing made things accessible for a wide variety of visible and invisible disabilities. I was the person responsible for making sure that all the projects I touched met the accessibility standards, and improved as technology improved. Then my disabilities became, not so invisible and much more restrictive, and now that I am so very – Other. I am smacked hard in how Abelist society is to an often cruel degree, and at worst not only am I now excluded, Able bodied people think I should be grateful for the access I have. I should just accept that I am on the Fringe, and be happy with what I have. I mean seriously now that I’m in a powerchair I can’t honestly expect equal equitable access to everything – you’re a minority after all. Yes actually I do expect equal and equitable access everywhere. It’s the law and you’re supposed to be compliant by 2020 which is 4 months from now, but what do I know?

There is abelism in health care. I am constantly having to educate new PSWs because it’s like a revolving door of new people.

It’s been a terrible few weeks with muscle spasticity. It’s not charlie horses; it’s muscles so tight and hard that they sometimes feel like bone on the really bad days. No muscle in my body is left unaffected. It’s the reason I don’t sleep more than 2 hours at a time. It’s the reason I am currently not at work like I want to be. It’s also the thing I try to limit my complaining to “It’s a bad day” because I’m already doing everything I can to deal with this nonsense and there’s nothing I can do until I see another specialist in a few weeks. I’m managing it the best I can.

PSW: There’s got to be some medication you can take to fix that.

Me: I’m already at over maximum dose for one medication, and they’ve added a second and no – if medication, exercise, physio, massage and accepting PSW Care hasn’t dented it – It’s just part of MS and it sucks.

PSW: That doesn’t make sense.

Me: 🤷‍♀️ It is what it is.

PSW: Well you’ll have to find something so you can do care on your own eventually

Me: Chronic degenerative illness doesn’t work that way, and if it did you’d be out of a job. (It’s been a really bad week. My filter broke)

I cannot deny ableism because it is part of my lived reality.